It looks like it's been a while since I've posted.

We took our 6 1/2 year old son to see a Mental Health Specialist. He has been officially diagnosed with Separation Anxiety Disorder. I know his anxiety and panic attacks are a reality, but some how hearing the actual diagnosis is affecting me. I feel sad. I'm a stay at home mom and I feel like I have somehow failed him. This is my job, my desire, my life's dream, and I love my children more than anything in this world. I can't stop feeling like I've done something wrong.

We've raised both kids in the same house, in the same town. I've done the same early childhood classes with both. They've both had the same upbringing. I know every child is different, but Emily and Aiden are so different. Emily is a social flower, a dare devil. She loves roller coasters and can have a new friend within minutes of being somewhere new. Aiden suffers from extreme anxiety and panic attacks, to the point of affecting his life and ours. He then cries because he can't do things that his friends are doing. He understands why we are seeing his new doctor. He even said he wants to keep seeing her so that she can help him. At 6 1/2 he wants help and has asked for it. It breaks my heart to see him so upset and frustrated and angry with others and himself.

I have guilt and feel like I did something wrong. Did I do too much warning about stranger danger? Did I scare them too much by telling them how to fight and scream if someone tried to grab them or kidnap them? I know the realities of the real world. I was chased by two men in a brown van with a gun while walking home from school one day. I squeezed through a hole in a fence and ran into a liquor store. My worst fear is that someone would take my child and hurt them.

I know I do too much for my children and "over parent". I know they need more responsibility and need to do more things on their own. I just do things myself because it's easier than the fight and battle. I always cave when they refuse to do something and there are no consequences to them for not helping me.

I also wonder too if my Moyamoya caused this in him. He was 3 when I had my strokes and spent so much time in ICU and then had my 2 brain surgeries. He came to California with our family while I was in the hospital for my surgeries. Bruce was with him some of the time, but the majority of that 2 1/2 weeks he was with my sister-in-law, and was away from me. He saw me a few times through the hospital window, while hooked up to everything. Did I scare him? Is he afraid to leave me for fear that I won't return, or worse yet, die?

I just don't know, but I wish I could take away all of his pain, anger and frustration. It just breaks my heart.

So, it's 3:00am and I am up. I can't sleep. I suppose the nerves and anxiety of going back to Stanford for my 3 year check up is kicking in. I feel fine, and I'm confident all my testing will be fine, but there's a small part of me that says "Ya, but...what if...". It's a scary place to be. With Moyamoya the reality of suffering, dying and death is so real...I see it every day. I pray a lot, and try very hard to send all my worries and concerns up to Him. He is my rock...

Going back to bed an hour later now to see if I can get anymore sleep. Flying is hard enough on a Moyamoya brain, I don't want to be sleep deprived as well. Good night!

Monday was a very emotional day. As World Moyamoya Day, many people, from all over the world, posted their stories and pictures to our Facebook page. Many success stories, many promoting Moyamoya awareness, but so many losses too...young children, mothers, and other family members and friends. It doesn't have to be this way! Getting the correct diagnosis and treatment is so important, that's why I will continue to spread awareness and post relevant stories as I can. You might get sick of hearing it, but stroke awareness and knowledge of Moyamoya might one day help save a life!

This was a post I made on Facebook on the day following World Moyamoya Day, and one of my responses was that they were "glad my surgery was a success and I have no more problems". It's a seemingly harmless comment, to the uneducated, but to us who know Moyamoya, it's far from true.

I am very blessed that I found Dr. Steinberg and Stanford Medical Center, the leaders in Moyamoya disease. I am so thankful that I had bilateral STA-MCA surgery, but I am far from problem free. I'm afraid this post may turn into more of a rant, so bear with me...

I still have physical and psychological problems. I had 3 strokes and 2 life saving brain surgeries. They removed 2 golf ball sized chunks of my skull! 

• My left eye blinks slower than my right.
• My left hand has lost fine motor skills and strength
• I have 2 pretty gruesome scars
• I get headaches
• My head aches in cold weather due to screws and scar tissue
• My head, in my surgery areas, feels and sounds hollow to me when I touch it.
• I have a terrible memory
• I sometimes say the wrong word when I talk. It starts with the same letter of the alphabet, but is WAY off
• If I get up from a seated position too quickly I get dizzy. Like - hold on to something, close my eyes and breath through it for about 20 seconds - dizzy.

Nights when I go to bed with a headache, I am afraid to go to sleep. I am afraid I will have another stroke, since that's what started my Moyamoya journey...waking up, with left side weakness, from having a stroke in my sleep. My anxiety is high, and I have my husband check on me through the night to make sure I am alright. I am also afraid I won't wake up at all, I fear for myself and my family. How terrible would that be for them! I live with and think about these things all the time.

There is not a day that goes by that I do not have some reminder that I have Moyamoya. When I'm sick I have to worry about what medications I can take. On a sunny, bright day I can't wear sunglasses. I can't wear any glasses...they could cut off my blood flow to my brain, as they used the superficial temperal artery to do the bypass surgeries. The headaches and dizziness...at least one happens daily.

I just found out on Monday about a woman who had both STC-MCA surgeries and was doing very well, for 7 years. Earlier this year she had a stroke, was recovering and had another one, and she passed away. This really scares me! I am now terrified that, despite having these surgeries, something could still happen. I could still have another stroke! Thank goodness I go to Stanford next month for my 3 year check up, because I have some very real fears and concerns.

I am usually a pretty positive person, don't get me wrong. I am very blessed, but I am FAR from problem free.

I go back to San Francisco in June. My mom is going to go with me, for kind of a Girl's Trip, with some medical junk thrown in. I have the flights made, the rental car and the hotel reservation made. Looks like we're all ready to go!

I am also excited that we get to go to the annual Stanford Moyamoya picnic as well. I've been wanting to go for so long, and am so happy that I could work in my check up around that weekend!

My weight loss so far...

I am proud to say that I am currently down 23 pounds, and have about 37 to go. I am on my way... :)

When I got sick, and had 3 strokes and was told I would die without these 2 life saving brain surgeries it shook me to my core. It was the most scared I have ever been in my life, not only for me but for my family as well, my kids were 2 (almost 3) and 4. I lost a lot of myself during that time. I lost control of my life, had to depend on others, and lost confidence in myself and my abilities. I mean, if my body failed me, to the point of almost dying, what am I worth? I really lost a lot of self worth and esteem and spent a lot of time being afraid to even try doing anything. I reverted inward, and put up a lot of walls to protect myself. I'm slowly starting to gain myself again, starting to come out of my shell, bringing down my walls...feeling very vulnerable and out of my comfort zone, but I know the only way to grow is to step out of those comfort zones, and I really feel good and ready to do this for myself!

I can't believe my baby girl will be 8 years old on Sunday! Wow...where does the time go?

We were supper blessed to have her, after 11 years, 3 months and 22 days, many infertility procedures, including IVF, and many, many heart-breaking days...she was worth it all though!!! 

What an amazing tattoo! I just had to share... (it's not mine, but another Moyamoya Survivor's)

There are so many out there trying to promote awareness for this extremely rare disease. There is so much unknown, there are even some doctors who have never heard of it. We need to make sure we get the word out, and educate all who will listen!

I just spent 3 days with a sick child. My daughter had the flu...not fun! She had a fever of 102*, and was throwing up. I feel so helpless when my children are sick; I want to take away their pain and make them better, but all I can do it make them as comfortable as possible and tend to their every demand. Thankfully she is better today, and back in school. I'm a little nervous because my stomach has been feeling volatile since last night. I sure hope I don't get it now. Or worse...her younger brother!

Speaking of younger brother, he woke up this morning wet. Poor guy had a dream he was going to the bathroom and actually went in his sleep. He's six years old, I know it was an accident, but now it's one more thing I have to clean. On top of puked on blankets and towel, now I get to figure out how to clean a mattress. (I had a cover on it for years and took it off because he was old enough a few months back. Oh well...) He felt bad enough, didn't want to add any stress, shame or guilt to him. I know how he feels, even as an adult this has almost happened to me.

So, today I will be washing tons of towels and bedding. I'm so tired and warn out too, taking care of sick kids has worn me out, I think. I need to get back to exercising, that always makes me feel better. But, I hurt my knee and am limited to what I can do now because of it. At least I can still do Jilliam Michaels' circuit weight training. Just not the Jumping Jacks!

Beautiful sentiments, that are sometime hard to put into words. This was written by Reagan Wilson, Moyamoya survivor. I think it says it all...

Today is my 5 year Anniversary since surgery at Stanford. I thought I would share something with you that I wrote for this day! Just a little something about some things I've felt as I have walked through this Moyamoya journey!

----------------Refined-----------------
Refined by something that left untouched,
Would have resulted in the end of tomorrows.
Stumbling upon a path that created
A possibility for life to go on.
Life that we often measure by our wants
Or what we can obtain.
Life in its beauty is immeasurable
Not defined by the so called “treasures” we covet.
Strangers taking a moment of time to make a difference
And giving a chance for a lifetime of tomorrows.
A chance to watch children grow.
To be an inspiring person from the strength
Gained from the refinement.
Refining is not an easy road and often a path not taken.
It is met with tears, fears and frustrations.
A roller coaster of emotions
Battling to overcome the struggles that come with what has been handed.
Wanting many times to give up
But knowing there are those waiting for you to be strong.
No choice but to fall on your knees
And cry out for intervention.
To fight back with all you have
And learn….
That when life knocks you down
You best get up with a smile on your face
And laughter filling the air.
To give of yourself freely
And tomorrow when you wake up,
Give of yourself some more…
For once your tomorrows were numbered
And now they are cherished moments where the meaning of life is found.

Today I am grateful and happy that my knee, while still a little crunchy, is well enough that I can get back to Jillian's abuse, LOL! (I signed up for JillianMichaels.com, for weight loss and exercise). I completed her 5 circuit program today in a 1 hour record (for me) and I now feel pumped and ready to go. I am also grateful for 80's "Hair Guitar" music (channel 829) and that I am well enough to be able to dance like a crazy woman to it in my living room! (Yes, I AM that old. I will be 42 tomorrow, and am super blessed to add another year to my life. It's a gift, and I won't take it for granted!).

ROCK ON!

Moyamoya Awareness...

Here is another good link to a story with a woman with Moyamoya. Her mother works at Stanford, in the Moyamoya area (Neurology) so they really advocate for it.

One woman's experience with Moyamoya Disease. I just wanted to share it...by Linda M. Arnold...survivor.

Linda's story.

I'm sharing this for a friend of mine...and my heart is absolutely breaking for her and her family...

 A friend of mine, Crissa, has been put on hospice care for Moyamoya Disease.  There will be a benefit for Crissa's family on February 17th all day at Buffalo Wild Wings. Visit any of these Buffalo Wild Wings locations: Elk River, Plymouth, MOA, Crystal, or Chanhassen. Just ***mention her name*** (very important) and 15% of your bill will go to her family. They will be at the Plymouth location throughout the day and night and they hope to see lots of familiar faces!!!!

My heart is absolutely breaking for this family. One in two million, and here she and I are, in the same small town, both with Moyamoya but with very different outcomes. Our daughters are in the same 2nd grade class. Please pray for her and her family. She has 4 young children. 

Happy Valentine's Day!

Today I am grateful for all my loves...my friends, my family...and more intimately my children and my husband.

I am so blessed and grateful to my husband, Bruce. Twenty-one years of marriage takes work and dedication. We aren't perfect by any means, but we truly love and respect each other. He really is my best friend and the only person in the entire world I can truly be myself around. And trust me...I am NO picnic, that's for sure. I'm insecure and broken, yet he still loves me and chooses to be with me. I am very blessed!

I am also very blessed and grateful for my two beautiful little miraculous gifts from God, my children. It took us 11 years, 3 months and 21 days to get pregnant with Emily, including IVF and many IUI's. I remember the pain of every single day...4,129 of them...and they are both worth every day, every hurt, every pain. They were worth the wait, and I am so grateful and blessed that God gave them to me to be their Mommy!

Reason, Season, or Lifetime Friends

When someone is in your life for a reason, it is usually to meet a need you have expressed outwardly or inwardly. S/he has come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually.

S/he is there to meet a need. Then without any wrongdoing on your part or at an inconvenient time, s/he will say or do something to bring the relationship to an end. Sometimes s/he dies. Sometimes s/he walks away. Sometimes s/he acts up or out and forces you to take a stand. What we must realize is that the need has been met.

When a person comes into your life for a season, it is because your turn has come to share, grow, or learn. S/he may bring you an experience of peace or make you laugh. S/he may teach you something you have never done. S/he usually gives you an unbelievable amount of joy.

Lifetime relationships teach you lifetime lessons. Those things you must build upon in order to have a solid emotional foundation. You must accept the lesson, love the person/people anyway, and put what you have learned to use in all other relationships and areas of your life.

I am grateful for my friends. I don't have many, and sometimes that makes me sad, but then I realize it's quality, not quantity. Love those who love you, uphold you, and those that you grow from, and let those who's season have come and gone, go, with a footprint on your heart.

Living in Gratitude

I just started a book study with a group of women, mostly from my church, about Living in Gratitude. I think this is really important, and something that everyone can agree on, on how important it is to be grateful, and thankful for what you have.

Too often we see and dwell on what other people have...bigger, newer houses, cars, clothes, better acting kids, a bigger paycheck, a more impressive job title...you name it. These feelings create unhappiness and ungrateful hearts which can cause depression and jealousy between people. The only person we should compare ourselves to is who we were yesterday and try to learn more every day. Open up, be vulnerable, admit your faults...it is only then that you can truly grow as a person and start to be grateful for what you have and who you are.

I am challenging myself (and you) to be intentional about your gratitude. Be thankful and grateful for something every day. Say thank you, do nice things for other, and really live by The Golden Rule. wouldn't the world be so much better if we all did this?